Our core content on Lung conditions and related factsheets has been translated to a number of other languages.
For more languages explore all available Factsheet translations.
Volunteer as a translator or learn how to translate using Chrome, Firefox or Edge browsers.
Our core content on Lung conditions and related factsheets has been translated to a number of other languages by our volunteer team.
For more languages explore all available Factsheet translations.
Volunteer as a translator or learn how to translate using Chrome, Firefox or Edge browsers.
Home » Rare disease day 2023: putting a spotlight on rare conditions
On 28th February, Rare Disease Day will raise awareness of and generate change for the 300 million people worldwide who live with a rare disease.
Examples of rare lung diseases include alpha-1 antitrypsin deficiency, lymphangioleiomyomatosis (LAM), idiopathic pulmonary fibrosis (IPF), bronchiectasis and sarcoidosis, and there are many more.
This year, Rare Disease Day will focus on equity. Everyone deserves equitable opportunities and access to healthcare but people living with a rare disease are more likely to experience treatment inequality, misdiagnosis and isolation.
How does ELF support rare lung diseases?
ELF supports Rare Disease Day and works all year round on a number of activities and projects supporting people with rare lung diseases. This includes collaborating with a number of organisations working in this area, including EU-PF, PAH Europe CF Europe – to name a few.
We have a number of Patient Advisory Groups working in rare disease areas who provide feedback and personal experiences to help improve treatment and healthcare. Our childhood bronchiectasis PAG is currently recruiting for new members. If you are a parent of a child with bronchiectasis, contact us to learn more and find out how you can get involved: info@europeanlung.org.
A number of people from our patient network have also shared their experiences of living with a rare disease. You can browse these videos and testimonials here.
You can also read more about symptoms, diagnosis and treatments for rare lung diseases in our information hub:
If you have any queries or would like further information from us on rare lung diseases, please get in touch: info@europeanlung.org.
What is happening during the campaign this year?
For #RareDiseaseDay 2023 the campaign is encouraging people across the globe to ‘light up’ in solidarity. You can support the #LightUpforRare campaign by illuminating your home or a monument in your city or share your photos, videos and experiences to help build awareness.
Over 6000 different rare diseases have been identified to date. Due to the low prevalence of each disease:
Held on the last day of February each year, Rare Disease Day was launched by EURORDIS and its Council of National Alliances in 2008.
Sign up to get the latest information and research on lung conditions, hear about our upcoming events and campaigns, plus views from experts and patients! You can unsubscribe at any time.
ELF is a non-profit organisation registered as a UK company (VAT no. GB 115 0027 74) and charity (no. 1118930).
Our Brussels office enterprise number is 0738.383.695
European Lung Foundation's TR ID number in the Transparency Register is: 094039644810-79
Cookie | Duration | Description |
---|---|---|
__Secure-ROLLOUT_TOKEN | 6 months | Description is currently not available. |
__Secure-YEC | past | Description is currently not available. |
__Secure-YNID | 6 months | Description is currently not available. |
Cookie | Duration | Description |
---|---|---|
_clck | 1 year | Microsoft Clarity sets this cookie to retain the browser's Clarity User ID and settings exclusive to that website. This guarantees that actions taken during subsequent visits to the same website will be linked to the same user ID. |
_clsk | 1 day | Microsoft Clarity sets this cookie to store and consolidate a user's pageviews into a single session recording. |
_ga | 1 year 1 month 4 days | Google Analytics sets this cookie to calculate visitor, session and campaign data and track site usage for the site's analytics report. The cookie stores information anonymously and assigns a randomly generated number to recognise unique visitors. |
_ga_* | 1 year 1 month 4 days | Google Analytics sets this cookie to store and count page views. |
CLID | 1 year | Microsoft Clarity set this cookie to store information about how visitors interact with the website. The cookie helps to provide an analysis report. The data collection includes the number of visitors, where they visit the website, and the pages visited. |
MR | 7 days | This cookie, set by Bing, is used to collect user information for analytics purposes. |
SM | session | Microsoft Clarity cookie set this cookie for synchronizing the MUID across Microsoft domains. |
Cookie | Duration | Description |
---|---|---|
yt-remote-cast-available | session | The yt-remote-cast-available cookie is used to store the user's preferences regarding whether casting is available on their YouTube video player. |
yt-remote-cast-installed | session | The yt-remote-cast-installed cookie is used to store the user's video player preferences using embedded YouTube video. |
yt-remote-connected-devices | never | YouTube sets this cookie to store the user's video preferences using embedded YouTube videos. |
yt-remote-device-id | never | YouTube sets this cookie to store the user's video preferences using embedded YouTube videos. |
yt-remote-fast-check-period | session | The yt-remote-fast-check-period cookie is used by YouTube to store the user's video player preferences for embedded YouTube videos. |
yt-remote-session-app | session | The yt-remote-session-app cookie is used by YouTube to store user preferences and information about the interface of the embedded YouTube video player. |
yt-remote-session-name | session | The yt-remote-session-name cookie is used by YouTube to store the user's video player preferences using embedded YouTube video. |
ytidb::LAST_RESULT_ENTRY_KEY | never | The cookie ytidb::LAST_RESULT_ENTRY_KEY is used by YouTube to store the last search result entry that was clicked by the user. This information is used to improve the user experience by providing more relevant search results in the future. |